Consumer Genetics: What About Informed Consent?
Research Article
Matt Artz, Doug Henry, Carolina Severiche Mena
Human Organization, 17 November 2023; 82(4) pp 394–404
Abstract
With the dramatic rise in Direct-to-Consumer Genetics has come increasing concern for the potential abuse of consumer health data, often presumed confidential. Companies exchange and monetize their customers’ DNA in a competitive marketplace, obtaining consent through complex legal contracts that consumers must sign. However, drawing on ethnographic data, we show that this consent is rarely “informed.” Particular concerns include lack of contractual knowledge, misunderstanding of the potential benefits and risks, privacy, and low genetic literacy.
Editor’s note: Human Organization is the Journal of the Society for Applied Anthropology, “founded in 1941 to promote the investigation of the principles of human behavior and the application of these principles to contemporary issues and problems.
Center for Informed Consent Integrity 